What helps fibromyalgia?

[hearts and roses]

What medications or exercise routines or dietary changes have helped any of you suffering with fibro?

I have recently been diagnosed with it and I have to say, I am still doubtful about the diagnosis. I have all the symptoms and my Dr has ruled out RA, Lymes, and PA, as well as other inflammatory diseases.

The pain is just unbelievable in my legs, especially at the end of the day. By about 8:30 PM I am in spasms and have to take a muscle relaxer. But I hate taking them because then I feel drugged out the next day and I'm only taking 5mg!

So between the inflammation and the pain, I have been laying low, I've been more and more depressed - now my counselor wants me to go back on an AD. I've heard that cymbalta is used for depression and fibro - anyone tried it? NSAIDS don't work at all so I don't bother with them anymore.

The last thing is that as some of you know, we've been having our house exterminated once a month for the past 3 months for ants. Now although some of this inflammation and pain came well before the exterminators showed up - do you think the severity is in any way related to the fibro symptoms I'm experiencing?

I just want some feedback before I go see my Dr this afternoon and you all are so great at sharing your stories. I've gotten a lot of info on line, but I'd like to hear about some first hand experience. Thanks.

 

[Suz]

Jo, how long have you had these symptoms? Is there any way the whole thing (fibro diagnosis) might be related to the junk the exterminator is spraying?

Suz

 

[hearts and roses]

Suz, I've had the more obvious sumptoms since early January, however, they were not this severe. Prior to that I have had bouts of inflammation and pain all over my body and my Dr has touched on the fibro thing but never gave me a definitive diagnosis. My symptoms have progressively gotten worse over the past 3 months, and now I am hoping this is the peak because I can't take much more pain than this.

The thing is that there are several factors for us to take into consideration.

Beginning in February I was suffering from a wicked sinus infection, for which I did two rounds of the antibiotic Levequin. Just as it was clearing up, I was struck by severe Spring allergies. That entire episode kept me out of commission for almost 3 months during which time I did NOTHING in regards to exercising or eating right. I had no energy, I was in pain, felt like I had the flu, etc. On top of that my menstrual cycle was really driving me bonkers and eventually, I had that ablation a couple of weeks ago. In addition to the pain, I have been so tired and lethargic about everything. However, even when I get a full night's sleep, I feel like I haven't slept enough.

Throughout this time frame, we were being attacked by massive amounts of ants and when all the methods we tried at home didn't work, we finally called in an exterminator who sprayed, dusted and fogged our home. We had a resurgence 2 weeks later and called them in again after 30 days. They sprayed and dusted - no fog. Again, after 2 weeks, we had another resurgence and called them in again. This last time (last Saturday) they sprayed and dusted - no fog. *Incidentally, Izzy the pup got very sick Saturday night and I still think it's from the spray.

Last year my Dr said she thought I had a 'touch of fibro' and I just sort of forgot about it, because it didn't seem that severe and I wasn't in much pain. Now, however, it's debilitating...I can barely walk in the mornings and at night I am almost in tears from the burning and throbbing pain in my legs. It feels like someone poured acid into my legs and it's burning it's way out. Ugh - how horrible is that? My muscles just feel so constricted and I am constantly doing leg stretches to relieve the pain, to no avail. If I press on my palms and bottoms of my feet, it's as if they are bruised, but there are no bruises.

So like you, Suz, I am wondering if it's truly fibro or is it that my immuno system is simply out of wack due a combination of the sinus infection medications, allergies, dietary changes and/or the ant spray crud - or ALL of them.

 

[DammitJanet]

First of Jo...I wouldnt wish this on my worst enemy. Ok...maybe on those that say...oh but Fibro isnt a real diagnosis...I would wish it on them for a week.

You are describing my life pretty darn well! That acid feeling in the legs...is it burning inside the bones...kinda feels like the marrow is burning? If so...got it but I am not real sure it is fibro. Maybe or maybe not.

I dont know how well the AD's help with fibro because I cant take them. Some people take Elavil for it. I have heard some good things with that. I have heard that cymbalta is good for some. Lyrica helps many. I wasnt one.

What works best for me is low dose pain medications such as darvocet, vicoden, or lorcet taken as needed and something like flerixil or another muscle relaxer. Also you may need to take a sleeping medication to make sure you are getting good sleep.

If your legs and back are bothering you, taking a hot bath should help. Soaking with a combo of epsom salts and hydrogen peroxide in a bath that is as hot as you can stand it for 20 minutes will help. Or should. Then get out and lightly towel off and lay in bed. You should feel worn out.

I cant think of anything else right now....lol. Minds blanking on me.

 

[Josie]

There is a huge debate going on about Lyme Disease. CT is very involved in changing some laws and I believe it is your governor that filed a lawsuit against the IDSA (Infectious Disease Society of America).

The debate is between the widely accepted IDSA standards which rely on a not very accurate test and treat for a short time and another organization of doctors called ILADS (International Lyme & Associated Diseases Society, I think) who diagnosis clinically and with a test from a special lab that is more accurate.

Unless you went to an ILADS doctor and got an IGeneX test, I don't believe Lyme has really been ruled out accurately.

I am diagnosis'ed with Lyme based on the IGeneX test and a few, minor symptoms. I am taking antibiotics so that I don't end up with a fibro or other diagnosis. I am not as certain of all of this as some Lyme patients, because opinion is so divided, but my symptoms do go away when I take the antibiotics. I will be fully convinced when my symptoms are gone and don't come back. My symptoms are muscle twitching, joint pain, and breathlessness.

Treatment for Lyme is antibiotics, possibly long term, until symptoms are gone. My (limited) understanding of fibro is that treatment is for symptom management and there is no cure. You should do your own research on Lyme before you rely on the doctor's opinion completely.

 

[flutterby]

I have a fibro diagnosis, but my doctor agrees that it's not the biggest issue. The only time I really feel fibro pain is when there is a change in barometric pressure. I have other muscle symptoms, but when I have those I am generally running a fever which doesn't fit.

That said, have you tried the muscle relaxer Skelaxin? It is much, much, much less sedating than the others and, for me anyway, it works better. The only problem is that it's not available in generic and your insurance may or may not cover it. Mine doesn't and it was around $140 for 30 pills. It's rx'd for 3 a day, but I only take it at night when needed because while it's not as sedating as the others, it is still mildly sedating.

Has your doctor checked your ESR and CRP? Generally, those are not elevated in fibro because fibro is not an inflammatory condition. If those are elevated, it should be an indicator that something else is going on. If that's the case, I would ask to see a rheumatologist. None of the inflammatory rheumatic conditions can be diagnosis'd solely on blood work. (I keep saying that and I keep reading that from all of the reputable sources, but I also have to keep reminding the doctors of that, too.)

 

[hearts and roses]

Thank you for the replies. I saw my Dr today and she is ordering more blood work for various other Lyme tests that don't normally show up on a regular run of the mill Lyme test/Western blot because those came back negative. I will get those new tests tomorrow morning.

She also prescribed for me a non-drowsy flexeril called Amrix. I also was given a month's supply of Cymbalta to try out. I needed the AD anyway and cymbalta is supposed to help with the accompanying symptoms of fibro - so it's like I'm a test subject I guess. Which I don't mind in the least as I am desperate to find something that helps.

And lastly, she ordered me to go have (I think it's called an) EMG (electromyography) to test those nerves and muscles in my legs and feet. I think that will be sometime next week.

She hasn't ruled out sending me to an RA doctor, but she'd like to see how these tests and medications come out first, as she doesn't believe it is RA.

In the meantime, she wants me to cut out all sugars and crappy carbs and stick to whole grains and fruits and veggies - organic if possible. This will be a trick, because I've been so short on cash that I've been shopping at PriceRite, where they don't sell organic. So, I will have to buy myself a few things and keep them away from everyone else.

My Dr has ruled out the pesticides as a cause that have been used in our home since they are dry and we haven't been fogged in over 2 months, ample enough time for any lingering effects to have dissipated by now. Also, my pain began before the exterminator ever came to our house.

Her final comment was "You definitely have fibro, but since the pain you're experiencing is mainly in the evenings and mainly in your lower legs and is so intense, I think there is something else going on as well".

Janet, I have been taking those epsom salt baths and they definitely help. But I find that they really do incapacitate me to such a degree that I can't do them during the week. I mean, I sleep like a bear and can barely get out of bed and when I do, my feet hurt so bad I feel like I may fall over. Ouch. I think I will shoot for at least two on the weekends and maybe earlier during the week so I can be well rested for morning.

So, we shall see. Thanks ladies. You're wonderful.

 

[Lothlorien]

I am wondering if it's truly fibro or is it that my immuno system is simply out of wack due a combination of the sinus infection medications, allergies, dietary changes and/or the ant spray crud - or ALL of them.

Could be, but can I tell you that I started experiencing leg pain that sounds exactly like what you are describing, when I was in my 20's? I would be fine in the morning (mostly), but by the end of the day, I felt like my bones and muscles were killing me. It made me very tired.

The docs I work for (orthos) tested me for a bunch of stuff and came up with nada. I had gone to a rheumy once, but nada. Finally, I went to another rheumy a few years ago, because it was just so, so bad that I just couldn't take it anymore. She did a battery of tests and everything was fine, except my magnesium level. She told me to start taking magnesium, which I did, but it wasn't nearly enough. I found out about a year later that I needed to take about 800 mg of chelated magnesium (a good one, not the junk in the grocery store). Once I did that for several weeks, the leg pain disappeared completely. I only feel it occasionally now when I get lazy about taking it.

Please try a good magnesium....start out with 300 mg and work your way up. If you start having loose bowels, cut it back a little.

 

[Nomad]

I have heard that magnesium supplementation is helpful.

I have one doctor who thinks I suffer from this. I certainly have had symptoms over the years.

Personally, I have found that Naproxen is helpful. Also, getting plenty of rest. This means establishing a regular bedtime and good sleep "hygiene" habits.

I have found massage to be helpful...as well as eating healthy foods and gentle to moderate exercise (building up to it slowly).

Also...magnesium salt baths/epsom salts

Avoiding stress where appropriate...taking a different attitude when and where possible.

Talk therapy if and when needed

 

[everywoman]

I was also going to recommend therapeutic massage. I get one weekly and it helps so much. My therapist is on vacation this week, so I didn't get my massage. And today, my body is letting me know.

 

[susiestar]

I haven't read all the responses, so if I overlap someone else's post I am sorry.

The biggest part of managing my fibro is learning to LISTEN to my body. I have to pay attention to how much things hurt, or don't hurt, or tingle, or whatever.

Pacing yourself is crucial. Remember the post a while back about the spoons? Each spoon represented something you did, and you only had a certain amount of them? Totally true.

You have to realize that what is fine on one day is too much or too little the next day, and the next and the next. Every day brings a new energy level.

Water aerobics are AWESOME, but only if you pace yourself. You are probably NOT going to keep up with the other people in a water aerobics class. Even if they are in their 80s or older.

I can only use heat on my body. NO cold stuff. The pool here was too cold so I couldn't do water aerobics. I ended up spending 4 or 5 HOURS trying to get warm. You will find docs and physical therapists who will INSIST that cold is what you need (or hot is if you have problems with that). I had a chiropractor that was SURE that cold would do a world of good for me. It had been 4 or 5 years since I had used a cold pack on anything. The chiro gave me his cell phone and home phone numbers to see if I had any problems.

By 4 hours after the 15 minutes of cold therapy I had gone into major muscle spasms. Every muscle in my body spasmed. I even had trouble swallowing! The doctor sent me to the ER and met us there. I was working so hard not to cry, because the shaking of crying hurt so bad. On a scale of 1-10 I was at 200. I ended up with IV pain medications and muscle relaxers for 24 hours and then more medications for that after I got home.

I now won't use cold therapy of any kind.

Ironically, I know a woman who has very similar reactions to heat!!

It is all very tough to pin down, this fibro thing. It is up to US to figure the ways to help ourselves. It really and truly comes down to paying attention to what your body is telling you.

My cravings for rare beef mean I a borderline anemic. Every time. Gagging on milk was one of the earliest signs my body didn't handle Vit D very well. There are so many odd things like that. You just have to tinker with your body.

Have your doctor check thyroid, thyroid antibodies, Vit B and D levels, liver function tests and have him explain what each of the ordered tests is for.

 

[Rannveig]

I am one of those helped by Cymbalta. Since I started the drug a couple of years ago, my fibro flare-ups are very rare. Before that, I did find that regular gentle exercise (swimming, walking on a treadmill) seemed to protect me a bit and that cold weather was better than hot. Over the years I've also tried osteopathy, alcohol, and prescription muscle relaxants, all to no avail. I used to cry it hurt so much, and I didn't think I could go on living with that level of pain. I guess if there's a moral to all the posts here, it's that different treatments work for different people, and it's worth it to keep experimenting to find what works for YOU, not necessarily your girlfriend, your mother, or your doctor's other patients. I mean, get ideas from wherever you can(!), but if something doesn't seem to work, then move on.

Good luck to everyone. And Godspeed to any researchers out there trying to find the cause and a cure.

 

[DammitJanet]

Jo...I really hope you dont have fibro and that it is something that can be fixed easily. Unfortunately none of my ailments seem to be easily fixable. They claim that fibro doesnt progress but I disagree. I am much worse now than I was when I was diagnosed. I am in a really bad flare now. Maybe it is a combo of the arthritis and the fibro acting up. Dont know...really dont care...lol. I just know Im in pain.

Whats really bad is that you get so used to living in pain every single day for your whole life that you become used to it. It becomes your norm. I have had doctors do really painful procedures on me and I just slightly flinch or say...ugh that hurts. They are like...why arent you crying or complaining or something...why dont you beg for pain medications? Well....yeah it hurts but I hurt anyway. What do you want me to do...scream, yell, cry constantly? It gets really old telling everyone that I hurt all the time. I mean if Im alive and awake..well chances are Im in pain!

These disorders really hoover the life out of you.

 

[susiestar]

It may be worth giving Cymbalta a chance. Both my rheumy and my psychiatrist thought it would be a good medication to try. It didn't make things worse. It actually didn't seem to do anything. I took it for 10 weeks with no change in how I felt.

I do have problems with my feet. It is psoriasis, but there is also "fibro related" nerve pain (neuropathy). Lyrica has been a total miracle medication for me. I no longer feel like I am walking on cacti with lots of long needles, or that I am walking on glass shards. I spent at least 15 years with that feeling.

With the lyrica I still need an antidepressant. I have tried most of the SSRIs and SNRIs. Also the other kinds. I keep returning to prozac. It is the one that works for me. (If prozac isn't "enough" but is helping some you might want to try luvox. My psychiatrist calls it prozac on 'roids because it is very close to prozac but is more effective. Wiz does amazingly well on it.)

I do get leg swelling sometimes with the Lyrica. But it goes away with-in a few days if I keep my legs up.

I hope you feel better very soon.

 

[susiestar]

Massage is amazingly helpful. If your insurance doesn't cover it you might try to get massage at a local vocational/technical program. The VoTech school here offers 1 1/2 hour massages for just $40!! They are usually about $100 or more here. And they offer quite a few other length massages and other types of massages. They will guide you through the process if you call.

You do have to tell the student how firm you want it, and what areas you want worked on. I have not had any student do work I considered "substandard".

It is often necessary to book a couple of weeks in advance, but it is worth the wait as once you get that first massage you are an existing client and are given first shot at new appointments /or new treatments.

This is often a closely held secret - I only found out about it because Wiz is a student there (tech school - not massage therapist training, LOL!)

 

[ML]

Jo I don't know much about Fibro but I feel that you should get more testing. Your immune system is totally comprimised from everything you've been through lately. I also think menopause could factor in there somehow. I know it doesn't explain the pain and I say this from instict because when I was going through the worst of mine my immune system was haywire and I had a yeast infection for about 2 years.

I hope the test reveal something conclusive and that you start feeling better soon.

Love and hugs, ml